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HI everyone.
julielarson
Posted: Thursday, October 6, 2016 2:30 PM
Joined: 9/30/2015
Posts: 1155


I have not been on this site for a few days.. I think in some way's I have been in denial over what I am going through. I have made some serious changes in the last year to how I do things that have made living easier for me. I do not forget things on the stove or in the oven because I us the timer on the stove and also I make use of the crockpot. I have gained some good incite into what some of my symptoms have been and that have been caused by my medication but my medication can not explain away some of what I go through. Like forgetting words and past conversations as well as experiences.  I am glad that we worked out that I do not have Parkinsons disease due to my medication that I am on for a mood stabilizer. I guess this writing is about mostly that I have neuropsychological testing coming up next week and I am finding I am getting nervous about it.  I do not know what the tests will reveal but I am ready to move from the place of not knowing to knowing. In a way I am looking for things to be just fine and that the MCI diagnosis is not something I am dealing with today, there is also a part of me that is expecting the worst. I sure do appreciate all of you here giving of yourselves and writing about things going on in your lives because it grounds me to read what is up.
The_Sun_Still_Rises
Posted: Thursday, October 6, 2016 6:29 PM
Joined: 7/24/2015
Posts: 3020


Yeah, the neuropsychs are nerve wracking while you wait for them...and again, as you wait for a month or more for the results. 

However, the test itself, is rather easy...and the examiner should be friendly and nice.  They are simple tasks like tracing things, drawing a picture like you see, naming animals, etc.

If you have taken one before, then a 2nd one hits you like dread because you already know what your answers mean...and you likely remember how you did last time...so you see the difference already, before the results come back. 

Stress tends be much worse for us with this...and harder for some reason get rid of.  It can make us worse for a while, but that is not lasting so try not worry if that is happening you. 

Yeah, I find that most people with this do not actually forget things on the stove...least not near like people FEAR we do.  Most of us tend to be extra careful and extra observant...so as ensure we don't.  Those most likely forget things on stoves, normal people...and younger adults.  Just one of the many ways our perceptions of safety are very different than actual facts. 

Also, let me be the first say...you are still you, you will still be who you are the day after the test, and the day after you get the results.  Although, other people's perception of you may change radically, you will have work very hard internally in order not let your inner perception of yourself change. 

Hang in there.  And I hope you will let us know how it goes. 

<3

 


Mimi S.
Posted: Thursday, October 6, 2016 7:04 PM
Joined: 11/29/2011
Posts: 7027


Julie,

Is this your first neuro?  

Each of us most likely reacts a bit differently and we may not all take the exact same sub-tests. 

Just try to relax and do your best. You know you're there to get answers.

I remember understanding when I did poorly on tests that required memory. That's what I was there for.

But tests that required no memory like putting blocks to match a pattern?  Oh well, it told the story that needed to be told.

Let us know your reactions when it's over.

There used to be a doctor in our area that gave neuro-psychs in morning and in the afternoon gave the results along with a phone call that included any family members that couldn't be there. That's the way to do it.

I waited only a few weeks, more common. The agony of many months is unacceptable.


julielarson
Posted: Thursday, October 6, 2016 7:21 PM
Joined: 9/30/2015
Posts: 1155


Mimi I have taken the test before and so I am more nervous about it this time because I know what is being looked at with the test.
BlueSkies
Posted: Thursday, October 6, 2016 9:24 PM
Joined: 2/24/2016
Posts: 1096


Hey Julie,    

Glad to see you got to reschedule your neuropsychological testing.  I think last time you had to cancel due to breathing problems, if I remember right.  Hope that all got straightened out.

I completely understand you being nervous.  I was pretty nervous when I took mine not too long ago too.  Once I started testing though things settled down a bit.  I was determined to get some answers and that's just the way you have to think about it, as something you need to do to get answers.  Whether the answers are good or bad, you need to know.   Hang in there Julie, stay strong and keep us posted.  Sending you a big hug and lots of love........


The_Sun_Still_Rises
Posted: Friday, October 7, 2016 1:08 AM
Joined: 7/24/2015
Posts: 3020


Yeah, the second time is hard all around.  You not only know what is being tested, you will have a good idea of the result as you are going through it.  Which even though the first test results hit like a ton of bricks, the second one is hitting you with 2 tons of bricks while you are still sitting there. 

My aphasia had started earlier in the month...and was just becoming noticeable (unhideable) by the day of testing....and in the middle of testing I could barely get one word out of my mouth.  I was stunned, shocked, and surprised by how hard I found the test...and how much worse my answers were.  I had thought I was still doing so good, that there likely wasn't much change. 

It also can, once again, bring you face to face with the very real aspects of this disease. 

But, on the good note, it is only one day...and after a week or so, you will recover.  It is less hard to wait for the results, and your examiner might even tell you some of them while you are testing (if it is the same examiner).  This is because you will already have a fair idea.  Getting the paper results are still a shock, but maybe nt as much as the first one.

Hang in there sweetness...even though stress is harder wash away when you have this, try do some nice things for yourself...and go easy on yourself. 

What people told me that helped...was it is only a test, a small measure of a very small part of yourself, that you are much more complex and diverse than this tiny test...and you will continue being you after the test.  

Anyways, hang in there...no matter what, the sun will rise again tomorrow.

<3


BillBRNC
Posted: Friday, October 7, 2016 7:11 AM
Joined: 12/2/2015
Posts: 1018


Julie, good luck with the testing. Me, I've had it with testing. Call me crazy, but when they did the Pet Scan and told me there's no question about it, I decided that there would be no more testing. I know what it going on with myself, or my wife does. Who cares what the neuro-tests say. My head geriatric expert told me that I should not waste my life worrying about the exact flavor, since they wouldn't know for sure until autopsy time, and that I should go out and enjoy the time I have left. I would have done it anyway, but it was nice to hear her say it. I guess you are still looking for a reasonably solid diagnosis, so I would probably do more testing if I were in your shoes, because knowing the score was very important to me. Anyway, good luck. Bill.
Mimi S.
Posted: Friday, October 7, 2016 9:00 AM
Joined: 11/29/2011
Posts: 7027


JULIE, just relax as much as possible.

I agree with Bill about retesting. I had three neuros and felt that was enough. My doctor has not pushed for more.

Good luck relaxing that day.


Michael Ellenbogen
Posted: Friday, October 7, 2016 9:24 AM
Joined: 11/30/2011
Posts: 4384


All of these test are very important to a good diagnose. I also believe it is important to have some at least a second time after a year. I know they are very stressful and disappointing but we must do them. They also kind of help you know were some of your difficulties are so you can lower some of your expectations which is so very hard to do. Please make sure you get this test.   


llee08032
Posted: Saturday, October 8, 2016 8:32 AM
Joined: 5/20/2014
Posts: 4408


Good luck Julie. You will feel better when the test is behind you and you have it over with.

I always feel so exhausted after the neuro psych exams. It is quite a workout on the brain for us. Plan to eat a nice meal and relax after the test is over.


alz+
Posted: Sunday, October 9, 2016 11:16 AM
Joined: 9/12/2013
Posts: 3608


Julie - you have so much self awareness which is not tested for but may be the biggest asset we have.

I took the tests over 10 years as part of alz research group. Being cheap, they were exciting to me because we got a low rate on nicer hotel room and free lunch - the Univ of Wisconsin hospital has super good food, like a food court but great Asian, Mexican, Organic, Italian etc.

Maybe you can think of a reward good enough to counter the pre test anxiety. When I finish the test I will __________. 

My last test was a plummet in the reassembling parts of images and facial recognition. I am feeling physically stiff at times, just can not get my body to move WITH WILL POWER. However if dog needs me I am up and at it. Husband needed me the other day and the body freeze was gone in a flash.

rambling off topic is another aspect of my dementia and it was fantastic to laugh about it with my daughter when she visited me.

Look forward to your results. I also believe there will be some breakthrough very soon. I found one for myself, I wish us all to find what helps us handle the changes.

love and courage


julielarson
Posted: Friday, October 14, 2016 4:58 PM
Joined: 9/30/2015
Posts: 1155


Hello everyone. I took the tests and I did not do as well as I did last time.. I could feel it. It only took about 3 and a half hours to take it.. because it was exactly the same test. I am glad it is over with but I am feeling quite drained from taking it.. I may be off line for a day due to our bad weather coming our way tomorrow.. I will rest now and know that I did the very best I could do.. Thank you everyone.
julielarson
Posted: Monday, October 17, 2016 11:45 AM
Joined: 9/30/2015
Posts: 1155


Hi all, I found the tests to be quite frustrating and draining.. I could not find the words for things due to having a blank mind. I am not so doom and gloom about it today but it does feel like there will be further answers from this test. They like to blame my medication for psychosis on my memory problems but she told me before we started the testing that if there is a decline it is unlikely my medications. I think I am done with tests.. I found this one to be so difficult that I do not want to take it again.
The_Sun_Still_Rises
Posted: Monday, October 17, 2016 12:09 PM
Joined: 7/24/2015
Posts: 3020


I am glad you are feeling a little better.  I hear you on being done with tests, many of us share that point of view, myself included.  Thankfully, you only need 2 neuorpsychs.  Decline over time is what is needed for a dementia dx...and no matter *which* dementia it is...they all progress and are fatal (unfortunately).  So the next step, as you are mentioning, is coming to some place of "acceptance"...which is a whole lot easier said than done. 

Many of us go through a period of denial, of bargaining, of all kinds of things, including depression...on our path towards acceptance.  I am sure you will find your own unique way through as well. 

Once we can get some form of acceptance...the next step is finding a way live with it...which you have already been doing, thankfully.  Making plans for the future, educating ourselves on the kinds of care we are likely get (which may even be worse than the diagnostic process, arguably), and hopefully writing a care plan of the way we would like certain things handled...is all another part of this. 

And when everything is in order...then it is just living, as fully and wonderfully as we wish.  Which I have say, knowing my end certainly helps me take living the fullest now much more seriously. 

This is a hard time for all of us, where you are now...many of us have been there...many more will be there.  Try do nice things for you self...be kind you self like you would a dear friend who just got similar news. 

<3


Iris L.
Posted: Monday, October 17, 2016 1:04 PM
Joined: 12/15/2011
Posts: 18362


Julie, repeated tests are of limited value.  Is the purpose for diagnosis?  I believe two sets of tests separated by a sufficient length of time may be necessary, in order to document that there is a decline.  But extensive testing is not necessary to monitor progress in a clinical setting.  However, for research purposes in clinical trials, patients are tested repeatedly and often.


For us, I believe we should pay attention to our capabilities in performing instrumental activities of daily living.  These include driving and paying bills and managing money among other tasks.


In the meantime, learning to accommodate and compensate in order to live our best lives is what we should be doing, as Sun said.  Follow Best Practices to improve functioning and to prolong the early stages.  Get affairs in order.  Then go live your life!  This is what I am doing.


Iris L.


julielarson
Posted: Monday, October 17, 2016 1:09 PM
Joined: 9/30/2015
Posts: 1155


I will not find out for two weeks what the results were from this round of testing.. I am taking this time to educate myself on dementias and seeing where I might fit.. I know it is a guessing game at this point but it helps me to see what is going on. I sure do hope that the results will include some idea of what I am dealing with because I only know so far that I have MCI and that it has gotten worse.
Iris L.
Posted: Monday, October 17, 2016 8:50 PM
Joined: 12/15/2011
Posts: 18362


Julie, I'm sorry to be the one to break it to you, but the doctors will be able to tell you only so much.  They will not be able to tell you how to live your life with dementia/cognitive impairment.  This you will have to discover for yourself, by your own readings and research.  The best place to learn is from your fellow PWDs here on this board.  Ask questions and read, read, read!  I have learned so much from the other members.


Iris l.


The_Sun_Still_Rises
Posted: Tuesday, October 18, 2016 8:45 AM
Joined: 7/24/2015
Posts: 3020


I found it helpful also google around the various components of our cognition while waiting for results. This helped me better understand the results...since they detail them in the various cognitive domains. 

I particularly loved the Automatic Function area of cognition and have found a way make great use of it as my brain progresses.  Automatic Function is the area like tying our shoes and driving is in.  It takes up little space and is a small cognitive load.  Providing we can make a pattern of behavior an Automatic Function...we can stay doing it indefinitely.  This is why advanced dementia patients can sing...or catch a pen when you drop it in front of them. 

But Executive Function is another big domain that is affected in dementia.  As is Short Term Memory (which is not what you had for lunch but rather much more immediate).  All the areas were interesting research and gave huge insights in how stay functioning for longer. 

<3


alz+
Posted: Tuesday, October 18, 2016 9:37 PM
Joined: 9/12/2013
Posts: 3608


Hi Julie!

I  came to boards to complain about something but started reading posts and forgot what it was! Really appreciate your thoughts and experiences on this board.

 about reading up on dementias: I chose to read alternative views when I was diagnosed because I had witnessed the total lack of understanding when caring for my Dad by his physicians in regard to dementia. The tests show decline and we think - this is a one way deal, only going to get worse. Then why try anything, just want to get it over with. The tests do not measure self awareness, changes you make to the way you do things. if they do they minimize the significance.

But i revolted and am doing better now than ... 2 years ago? My life is 100% better than it was 6 years ago. My relationships are few and honest, learning to ask for help while not expecting 100% perfect accomodation. I learn humility. I am learning to let go, to trust.

I cold not dress myself a couple winters ago, spent so many hours trying to do things, in that altered fuzzy state. My self care is as good as 5 years ago since I found cbd oil helps me. There are things that seem to be gone - like I will never pull off a garage sale or to clean out this house. I could fight that in myself or let it go, I always choose let it go

I have developed boundaries with my toxic family. I am nursing my dog through her Pawspice. I am kinder to my husband and closer to my daughter. In some ways my mind is more relaxed.

So, when you research your "future" also look for people who  have done it differently. I think we are entitled to choose our own path through this and I mean the whole range of options. A man called Lonestray on these boards wrote a book about his wife's ALZ and how he rebelled against the nursing system and brought her back to life.

 We learn how to negotiate around our losses, there is a lot to be lived sitting quietly looking at rocks on a shore, or examining fallen leaves. My bird feeder in winter is wonderful. You seem the kind of person who will choose well. We can also change our minds about living situations and care options even if we made other "definite plans".

for those of us living on financial air (and not for lack of effort, saving, investing properly) we might have a more forgiving future envisioned.

Understand most of the rest of your life is going to be good if your living situation is easy and comfortable, which can be a room that is sunny and warm and a bench at a park. The plush life is not about a fancy building and chandeliers. When I was diagnosed i read a quote something like "I see more emptiness in the eyes of a person sitting alone under a chandelier than in the eyes of an old woman outside a hut in a village."

not even close to the original quote but - don't believe everything the experts tell you. it is often wrong. 

Al Powers -is that the MD who gets it? Whitehouse? also read Eloquent Solutions story online about a woman who rescues her mom from medical care and the great time they had together after she developed dementia.

 You decide what matters to you and then it won't be perfect but it will be better than someone else's guess at what you need.

You're doing great already. When you start laughing again- you are on the right track.

much love to you, have courage

 


Lisa428
Posted: Tuesday, October 18, 2016 10:38 PM
Joined: 12/5/2011
Posts: 795


Hi Julie,

Sounds like you are hanging in there well.  I haven't been on the boards for a while (Father/stroke  Sister severe diabetic on insulin pump/broken leg).

I remember taking the first neuropsychological tests years ago. It took 2 days and I was completely exhausted!!!

Glad to hear you sounding better. I have learned as others have, count the things you do have and not the things you've lost.  Also, learning how to have a better attitude about the positive things really helps.

Good Luck.  Please, keep posting.

Peace and Hope,

Lisa


julielarson
Posted: Wednesday, October 19, 2016 2:32 AM
Joined: 9/30/2015
Posts: 1155


Thank you everyone for your input and kind words.. I have made an appointment with my therapist for next Monday because it is such a long wait to find out the results from the test and I know I did not do well on the tests. I had stopped seeing him but with this whole thing I will start going to see him again. I am finding out about the dementias and I am looking into lewy body dementia because it fits with the symptoms I have.
julielarson
Posted: Monday, October 24, 2016 10:20 AM
Joined: 9/30/2015
Posts: 1155


Hey everyone, I should find out what the results were for the tests on Friday of this week.. I am nervous about it but I am sure I will be glad to get them too.
alz+
Posted: Monday, October 24, 2016 11:02 AM
Joined: 9/12/2013
Posts: 3608


make a plan of how you want to live from now on.

no matter what diagnosis, or none, live your plan.

I went on a very different non-fear based trajectory when i figured out I want to have fun, lots of laughs, animals, nature, and to learn to let go of past grudges or beliefs other people "should do' anything.

even if i have a total healing i still want that plan.

think about it. most people set a course based on wrong info that this illness is a one way road to hell. seems every time they see that road sign they turn off, "oh  this must be it".  

you could tell yourself you will have more of whatever you love, and less of whatever you have an aversion to, for the rest of your life.

think about it. you're doing really good, will read how it goes when you post next time!  love and courage


llee08032
Posted: Wednesday, October 26, 2016 6:52 AM
Joined: 5/20/2014
Posts: 4408


(((((Julie)))))
julielarson
Posted: Wednesday, October 26, 2016 8:36 AM
Joined: 9/30/2015
Posts: 1155


Thank you everyone for your words to me about this process.. They have helped a lot.
alz+
Posted: Wednesday, October 26, 2016 6:24 PM
Joined: 9/12/2013
Posts: 3608


are   you getting news this friday?

sending you lots of love. will check in over weekend - thanks for sharing your story with this. helps a lot of others.  



julielarson
Posted: Friday, October 28, 2016 9:35 AM
Joined: 9/30/2015
Posts: 1155


Hi all, yes today should be the day I find out how I did... I am a nervous wreck about it too.
The_Sun_Still_Rises
Posted: Friday, October 28, 2016 11:39 AM
Joined: 7/24/2015
Posts: 3020


We're all here with you...fingers crossed.  <3

 


julielarson
Posted: Friday, October 28, 2016 12:27 PM
Joined: 9/30/2015
Posts: 1155


The Psychologist just called me and set up a time on Monday for finding out the results... I am frustrated... but at least I know when I will for sure find out.
The_Sun_Still_Rises
Posted: Friday, October 28, 2016 4:31 PM
Joined: 7/24/2015
Posts: 3020


Just one more weekend.  It is hard when they make you wait like that.  Maybe you can do some nice things for yourself this weekend, or do some things you like doing? 

Always remember, you are the same you that you were before you took the test...and you will be the same you after you get the results. 

<3


julielarson
Posted: Monday, October 31, 2016 1:46 PM
Joined: 9/30/2015
Posts: 1155


Hi everyone, well I got the results from the tests.. it seems that over all I am doing as well as three years ago in every area other than verbal memory. I am more impaired in that area than other areas. I know that and had asked for the county to have someone help me to remember what is said from my appointments with doctors and such.. by going with me to appointments but  they offered no help with this at all. I do not know what my neurologist nurse practitioner will say about this so I wait to hear from her. Apparently I am good at telling them where my problems are with memory so that is good. I am just so glad I belong to the site here so I got some coping skills from all of you over this last year.. They have helped me so much and I thank you all.